30 July, 2013

24 July, 2013

I've been trying to have a good attitude about people opening the door for Anna but today it all boiled over and I almost told someone, "Excuse me. Do you have any idea how rude you are and how stupid you look? Just leave us alone."

This is a little extreme since people are "just trying to help," but it is SO annoying and stressful. Here's the situation: Anna can walk, but she needs someone to walk with her and she also needs her wheelchair nearby. So if only one person is with her, she just rides in the wheelchair. She can't operate a chair so she is just passively riding.

One thing Anna can do is press buttons with prompting and support, so her parents always have her press the buttons for her chair lift, elevators, and doors. They taught me to have her do it and it made sense to me because a)pressing buttons is an important skill if all your communication devices involve pressing buttons, b)it's something active Anna can do to help herself get around.

We go to Starbucks a lot and they have a closed door with a wheelchair button that opens the door. This should be a good opportunity for Anna to open the door for herself, right? WRONG because just as I move Anna into position to press the button, someone leaps up to open the door for us.

Why does this happen? A cursory glance shows that I am putting Anna's chair close to the button, moving her arm in front of the button, and encouraging her to press the button; and she is extending her finger to do so. It's obvious that our goal is for her to press the button and it is not helpful to take away her opportunity to do that. Yet people rush in to press the button or open the door out of some instinct of "that's what you do for disabled people."

I know they're just trying to be polite and for some people in Anna's neighborhood, she is a familiar figure who they want to be friendly to. Plus, I'm sure I've done something similar to a wheelchair user in the past. I honestly have tried for so long to not resent people for opening the door for us, but today it hit me: every trip to Starbucks has become a race against the Door Police.

All I want is for Anna to get to perform a skill that she can do. But every time we enter or exit Starbucks, I take in the situation and see if people are close enough that they can immediately leap in to save us, or if it will take them a minute to get over to the door. If they're close to us, Anna doesn't stand a chance--she just isn't fast enough to push the button before someone puts an end to our imaginary predicament. But if people aren't that close to the door, Anna might be able to push the button!

If Anna pushes the button in time but pushes it too softly for it to work, there is no way she'll have time to try again.

I always feel disappointed when Anna doesn't get to open the door herself--frustrated that the button is not more sensitive or that I didn't move her hand more quickly before people noticed what I was doing. But why should we have to rush or get it right on the first try? If people would actually look at us instead of assuming we need help because Anna's in a wheelchair, then she would always get to open the door. Instead she doesn't get to most of the time, but if I ever expressed how annoying it is that people won't let her do it, I would be the asshole for not appreciating their good intentions.

23 July, 2013

This really just blends into the woodwork but since I happened to end up complaining about it in real life, here is a post about J. Cole’s apology for his verse in Drake’s “Jodeci Freestyle,” where he used “autistic, retarded” as an insult.

So, the apology isn’t great anyway, but the big thing I noticed is that he only talked about autism--he didn’t apologize to people with intellectual disabilities or their families, even though he used the word “retarded.” I can’t really blame J. Cole for this because it seems like no one told him. For example, the Anna Kennedy/Anti-Bullying Alliance petition against the lyric specifically asked him to apologize to people with autism and our families, and did not mention the other PWD who are hurt by the R-word.

Yes, J. Cole is stupid for not realizing that he should be apologizing to all people with developmental disabilities, but how stupid are organizations and activists that actually focus on disability for not asking him to do that?

There was a time when all developmental disability was assumed to be intellectual disability and people were confused by the word autism. Now the opposite seems to have happened--for example, when people find out that I work for someone who is nonspeaking, they immediately assume she has autism, instead of realizing that there are many disabilities that could cause someone to be nonspeaking. In general, people will often describe anyone with a developmental disability as being “autistic”--even though intellectual disability is the most common developmental disability!

It’s hard for me to articulate why this makes me so angry, but I think part of it is that it illuminates how most people don’t learn basic information about disabilities. Right now autism is being blown up as some kind of dramatic health crisis so it’s the only developmental disability the average person knows about and the catch-all term for all disabilities. It’s not so nice for people with autism to be treated like the four horsemen of the apocalypse, but it’s also terrible that people with intellectual disabilities are so ignored by the average person that J. Cole doesn’t even realize he used their diagnosis as an insult, and neither do autism advocates. (I’d love to say just autism parents, but I’ve seen some Autistic people who didn’t notice either.)

05 July, 2013

I watch a lot of TV and by the standards of TV I have a really good life. I have perfect friends and a job I love, and I even have someone I’m in love with. These are supposed to be the important things. Fiction doesn’t concern itself with getting dressed, eating regular meals, and showering, except incidentally. These things are supposed to be so boring that they blend into the background but these supposedly boring and insignificant things are making my life suck.

When I was growing up all I wanted was to be grown up and live on my own. Mostly I wanted to be out of school so I could be in places I chose and do things I chose, and especially so that I could meet people I could actually date and be friends with. When I was 17 I would struggle to make a list of anyone I considered a friend even slightly. Now I can’t imagine worrying about that, but I’m constantly nostalgic for being 17 because I didn’t have to pay attention to where I was, what I was going to eat, or what I was going to do. When I was 13 I couldn’t make it through the day without being told I was an ugly freak who should kill myself, but I had unlimited mental freedom to read books, write stories and songs, and experience everything as intensely as I wanted. Now that I get to have friends and not be bullied, I spend half my time wondering if it's worth it.

For one thing, I don’t read or write much anymore and I read much slower than I used to. I think it’s because I have to keep myself a little detached from everything. If I do anything too much, I might forget to sleep, eat, wake up, go to work, etc.

My relaxation activity (which takes up more or less of the day depending on how stressed I am, but always takes up a lot of the day) is to sit propped up with pillows, reading multiple things on the Internet at the same time, sometimes gchatting with people, sometimes making short tumblr posts, and sometimes watching TV in 2- or 3- minute intervals. I usually do this with an online timer open so I know how much time is passing (even if I’m not planning on stopping in an hour it’s still good to know that an hour has passed). I eat a lot of my meals during this and in the morning I usually get dressed and put on makeup without getting off the computer.

It might seem like it would be more relaxing to sit and read a book but it actually would be stressful because I could lose track of time. Once when I was little I remember crying because I accidentally read all day and it scared me that so much time could pass without me knowing it. But at least back then someone would find me if this happened. My housemates are nice but keeping track of me isn’t their job. Anna’s parents would call me if I didn’t come to work but by then I would already have done something wrong.

When I clean, do dishes, or do anything that can’t be done while sitting at the computer, I watch TV or listen to a podcast. Otherwise I won’t be able to focus because I’ll be afraid of spacing out. If I watch TV or movies with other people, I get stressed if I don’t do something else at the same time. But it makes everyone feel weird if I’m on the Internet so I try to eat, drink, or play handheld video games.

I stopped driving because I was a bad driver and I was suicidal then, which was a bad combination. But I’d be hard pressed to start again even if I could learn to be an okay driver, which I admit is possible. Riding the bus or train is the only time I can actually read a book or write something important or just experience what's going on around me or in my head. The bus always goes the same places and I don’t need to work hard to know when the ride is over because I ride it every day.

(Cross country Greyhound trips are a spiritual level experience for me because the ride doesn’t end and I don’t have to focus on anything practical for days. Even if I arrive dirty, hungry, sick, and tired, I’ve still gotten to space completely, for long enough that I stop even feeling nervous about it. Sometimes during the Greyhound ride I end up figuring out something or writing something I've been wanting to do forever.)

But I’m not intending to say it’s hard to work, do laundry, eat regular meals, sleep, shower, get dressed, and put on makeup. A lot of people can’t do those things without parents or staff and here I am doing them consistently, so by definition it’s not that hard for me. It happens.

What doesn’t happen is all the less immediate things. For example, to cash my paychecks I can either get up early on a work day or go to the bank on one of my one or two days off a week. I mean to do this almost every day but it usually takes at least a few weeks. Since I don’t cash my paychecks very often, I lose them sometimes. In theory I can get them sent to me again if I talk to someone and explain I lost them, but this isn’t something I even put on a to-do list because it’s not likely that I’ll do it and it’s a lot less immediate than other things on the list. Right now there is at least $100-300 that I should have been paid and could get but it’s not realistic.

Anna’s dad Richard coached me through getting about $800 when the agency that manages Anna’s services sent my paychecks to the wrong address several times. $800 is enough money that I can’t pretend it just isn’t important, but there’s no way I would have been able to get it without help so I guess I would have ended up trying to pretend that I have more important things to do than get an entire month's rent.

Richard is also helping me sign up for the San Francisco healthcare program. Even though it is available to everyone in San Francisco, I wouldn’t have signed up on my own. (Wouldn’t have been able to? Just didn’t want to becaue healthcare is stupid anyway?) It isn’t hard but it took several months because he had to walk me through everything and he is a human who has to keep track of his problems and 50% of Anna's problems, and is also the kind of person who helps multiple unrelated people with their problems. If I could just take care of my entire self, I could have signed up months ago.

Except it’s just a waste of time because when I lived in Cincinnati I had really good benefits but I never went to the doctor or even learned how to use my benefits card. Six months ago when I was visiting my parents, my mom decided to organize and pay for me to go the dentist. The dentist found 7 cavities (all hidden on the inside of my teeth, which is a great metaphor for my toxic personality.)

The dentist also noticed that I have a skin condition covering most of my face and ears. I tried to get her to stop touching my face by saying, "It's okay, I just have messed up skin."

"Don't say that!" she admonished me. "It looks like contact dermatitis." (It doesn't, because it's not.) "You should go to a dermatologist. You're a beautiful young girl, you shouldn't just be saying you have messed up skin."

So let’s pretend I have a health plan that covers this and I get myself together enough to make an appointment with a dermatologist and I get myself together to go to the appointment and I don’t cry when I have to talk about the fact that my face looks like a mask, and I can afford all the medicine and it’s going to work if I use it. Am I going to be able to deal with adding a bunch more things I need to do every day? Am I going to use it if it has side effects that require me to put drinking huge amounts of water at the top of my list of immediate needs? What if it makes my face feel weird and I have to spend time getting used to it several times a day? Fuck that. Then I cannot go to work, get dressed, shower, do laundry, eat, etc.

The agency that manages Anna’s services has yelled at me and made me cry for not being able to talk on the phone by myself. Richard had some plans for me to not be involved with them anymore, and he recently found out that the regional center could pay me directly and I’d make more money, but I’d have to deal with all the taxes that your employer usually figures out for you.

As soon as he unveiled the new information, I started thinking too hard to talk. Eventually I said: “I wonder if I would make enough to quit my second job and then I could use the extra day in the week to figure out the taxes."

“You wouldn't have to do that. It’s simple,” he said and continued basically being kind and suggesting how I could find someone to help me with taxes. “This could be really good. You could make more money and you could quit your second job and have the day off to play with dogs.” I'm trying to start volunteering at a dog shelter. Did I mention he is being super nice and has no reason to help me with the 400 things he's helped me with?

But the whole idea of the taxes made me get wary because it seemed like too much work, and then I got sort of shaky-sad, which is a feeling I usually only have when I look at my skin. Be careful, be careful, it's not realistic, it's not realistic, be careful.

PICTURE NOTE: as a lot of us probably know, Photobucket has recently stopped allowing people to hotlink images. For the first few years I was using this blog, I used Photobucket to host most of the images, so now they will not be visible! Until Photobucket goes under, as I imagine it will, you can at least see the images by opening them in a new tab.